Urachal sinus

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:431344Q64.4
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

A urachal sinus is a rare birth defect involving a small tube-like structure called the urachus. During fetal development, the urachus connects the bladder to the belly button (umbilicus) and normally closes completely before birth. In a urachal sinus, one end of this channel — usually the end near the belly button — stays open instead of closing all the way. This creates a small pocket or tract just under the skin near the navel that can collect fluid and become infected. Most people with a urachal sinus are diagnosed in childhood, often because the area around the belly button looks red, swollen, or drains fluid or pus. Some people may not notice any symptoms until an infection develops. The condition is sometimes called an umbilical urachal sinus or patent urachal sinus. It is different from a fully open urachus (patent urachus), where the entire channel stays open between the bladder and belly button. The good news is that urachal sinus is treatable. Surgery to remove the sinus tract is the standard approach and is usually curative. Without treatment, repeated infections can occur. With proper surgical care, most people recover fully and have no long-term problems. Early diagnosis and treatment lead to the best outcomes.

Key symptoms:

Redness or swelling around the belly buttonDischarge or pus draining from the navelPain or tenderness near the belly buttonA lump or swelling just below the belly buttonRepeated infections in the belly button areaFever when infection is presentFoul-smelling drainage from the navelSkin irritation around the umbilicus

Clinical phenotype terms (4)— hover any for plain English
Abdominal wall massHP:6000171Bladder fistulaHP:0004321
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Urachal sinus.

View clinical trials →

No actively recruiting trials found for Urachal sinus at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Urachal sinus community →

Specialists

2 foundView all specialists →
CD
Camila MV Moniz, Doctor
SAN ANTONIO, TX
Specialist
PI on 1 active trial
MM
Mehmet Kaplan, M.D.
Specialist
PI on 2 active trials

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Urachal sinus.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Urachal sinusForum →

No community posts yet. Be the first to share your experience with Urachal sinus.

Start the conversation →

Latest news about Urachal sinus

No recent news articles for Urachal sinus.

Follow this condition to be notified when news becomes available.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What imaging tests do you recommend to fully map the sinus tract before surgery?,What surgical approach do you plan to use, and will it be minimally invasive?,What are the risks of surgery, and what is the expected recovery time?,How will you make sure the entire sinus tract is removed to prevent recurrence?,What follow-up is needed after surgery to check for recurrence or other urachal problems?,Is there any long-term risk of urachal cancer, and how should we monitor for it?,What signs of complications should I watch for after surgery?

Common questions about Urachal sinus

What is Urachal sinus?

A urachal sinus is a rare birth defect involving a small tube-like structure called the urachus. During fetal development, the urachus connects the bladder to the belly button (umbilicus) and normally closes completely before birth. In a urachal sinus, one end of this channel — usually the end near the belly button — stays open instead of closing all the way. This creates a small pocket or tract just under the skin near the navel that can collect fluid and become infected. Most people with a urachal sinus are diagnosed in childhood, often because the area around the belly button looks red, sw

How is Urachal sinus inherited?

Urachal sinus follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Urachal sinus typically begin?

Typical onset of Urachal sinus is childhood. Age of onset can vary across affected individuals.

Which specialists treat Urachal sinus?

2 specialists and care centers treating Urachal sinus are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.